What It's Like: One family's A-Z life with Autism

Essay

About a week or so before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself. For many years I thought it possible I could one day be a leader. However, my cherubic cheeks, diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time. I was a cartoon character. An adult who looked and seemed like a child in every way. Even while playing grown up in my power suits and single karat ring, the truth was I worked in state funded nursing facilities selling hopes of a dignified death to desperate families. And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.

On this particular September morning I whipped into the parking lot just like I did every morning at about 8:45am. It gave me just enough time to put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am. As I dabbed the black goo onto my lower lashes, the goofy morning team people were on that local station and broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it. I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing. It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions. There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.

At just after 9:00am, as I was thinking about cutting the engine, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine.

“Another plane just hit the 2nd tower. I don’t understand what’s happening.” And neither did I. And neither did the rest of America.

I sat in my car and for the next 20 minutes listened intently to verbal chaos.

I walked through the day room where there were two TVs on different stations but both were playing the same footage over and over. There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with regular people, that tore into the middle of the North Tower and immediately turned to smoke. People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.

“Becky….Becky…can you turn this crap off and put on my shows?” Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning. My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand. Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm. She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country. I wondered if this is what dementia must be like. I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea. Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist. Camera crews live filmed authoritative sounding officers standing in the lobby and strategizing their plan. Community servants looking for leadership while nodding heads with axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon. But then came the first BANG. loud enough that it was audible on the crappy 20 inch TV. The workers stopped talking and looked around.

And then there it was again BANG. And again. I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably. It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows.

They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness. And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right. Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.

And then life went on.

I had a meeting the very next day with a former employer who wanted to me to come back to them and pay my tuition for graduate school which started the following week. I spoke nothing of 9/11 again. An old colleague was sitting at her desk and I waved to her smiling. She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River. But see…that was the thing. I thought no one knew how to act because I didn’t. It still was far enough away that we could all go on like normalish. I was aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so much more valuable as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing. I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war.

And that is what I told myself.

And then life went on. And eventually it did for everyone else too.

Life wondering exactly how a loved one died or if maybe they would show up some day. Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds. Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another. Life of knowing just how horrible people can be to one another. And life went on.

My home phone rang the other day right before my kids got home from school. For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment the telemarketer likely on the other end. The only other time it rings is when someone at the school does not know to call my cell…which often then strikes fear in my heart. So I picked up.

“Mrs. ATeam?” Gulp. It was A1’s new science teacher calling to say “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….” He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came. He called me to tell me I had a cool kid. And that was it.

I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not…but as I said, doe eyed ingenue does not work as well with crows feet.

Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger A2 has been in public school…my very speech impaired child…I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. And let me be clear about 2 things. Real clear since this won’t apply to everyone.

1. A2 tries to tell me about his day. Every day. And we CANNOT understand him.

2. I have ASKED for communication. Over and over. Every year. In front of other people. To almost no avail.

So teachers…this advice is completely free of charge. The key to keeping us special ed parents at bay.1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct IS time required in his IEP in our high-end-award-winning-district. My severely learning disabled child. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs”. The small tidbits we do get…well…that’s all…that’s ALL we get to know. The nuances are never there for us…if they are making a new friend, if someone hurt their feelings if they thoughts something was cool or interesting. And those things are definitely happening in my child’s world and no matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day. She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why? This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**? And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable. **IMPORTANT DISTINCTION: FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out. So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information. You just can’t tell us the child is on an IEP or anything regarding diagnosis.4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not out to get you or have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call. If you do that once a month without fail you will likely never hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let them also have a desk and have peers help them hang up their backpacks (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board make sure it is a good one like everyone else. If you are in reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies…that is why they are there.

BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.

For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.

Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.

As Kelly knelt on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.

I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing for this idea I had and had no idea what she was getting into” sounds lame..and lengthy. Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy. What do you call the person who helps provide authenticity to an experience? I don’t get to own that part.

Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert. She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know. I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.

We officially started a whole year ago as of today. Happy anniversary Kel.

Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.

When I got up off the pavement a year ago, I believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled. It was time to assume that folks were coming from a place of not knowing and not from a place of not caring. My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us. How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?

At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society. The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled. I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need. I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying. People were hopeful. I changed minds. Momentum. Or so I thought.

Through this process, I held the value of neutrality and being non-partisan. Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end. Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees. I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree. In social media, I shared stories of injustice or cruelty without solution or politics. Awareness is the first step of acceptance…it is not the end result.

Alas, I am not an advocate. I am a storyteller.

One year later, I am sitting at the same desk but in a very different place. I feel scared. Was I was horribly wrong about this genesis of readiness for change? It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.

The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.

Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.

“But…hasn’t that been your truth for years?” my husband asked.

He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety. Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.

“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.

Regardless of what you believe or how oppressed or even how entitled you are, it is time. Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.

It is time. We all have a story. Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.

My beautiful boy wandered into my room tonight. His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose. He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king. I can’t say I hate it when that happens. He is warm and cuddly and doesn’t thrash and kick like he used to when he was little. To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why. As he gets older, he seems no worse for the wear for it either. The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed. He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed. There are Things That Keep Me Up at Night. Who will hug him when we are gone? Who else will find his sweet smile so endearing even at 3:00am? We try to be optimistic about his future. A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is. We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future. Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him. I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can. We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services will help house him, feed him, care for him. We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears. So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure. I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb. My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults. I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”? What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult? There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle. Perhaps I truly believed all that because I see the innocence in his eyes. He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you. While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby. But don’t worry….A2 won’t judge you. He is forgiving and will love you anyway.

One year ago this week, I was given the honor of speaking in front of my religious congregation during the High Holidays on the topic of hope. I stumbled on the video link a few weeks ago….and found the old me…the me speaking from my heart a year ago to be jarring and familiar. This is the (abridged) transcript from that speech. I am posting this so I can link to it in the coming days….to tell you of the what-came-next…..

I’m here to share my story of hope. My family and I have been congregants of BT for the last 10 years. I have two versions of the story I was going to tell today…and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead.

So I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell. And mostly because of Rabbi’s sermon last night on vulnerability I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people out here in the audience who feel the same way that they can recognize that they are not alone. You see…sometimes its not about being hopeful or hopeless…..sometimes there is this vague middle ground if that exists in hope. I have a child with Autism and he is a sweet, beautiful boy. And he lives with Autism. An Autism that impairs him from a life of independence. I’m part of a family who is also living with Autism. An Autism that impair us from a life of independence. Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly. I’m also pretty visible in the community…and because of that I sometimes feel like I am the “Autism representative”. So, Side A is extra-super truthy. And it shows a side of hope that’s hidden away that only parents with children with significant disabilities can understand. That we hide away. But by sharing this truth of hope I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help. It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. Side B is the very pretty version and it’s the version you might expect to hear. Its even capped off with a prayer. But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing that there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope. So thank you—Rabbi for giving me the opportunity to come and share my story. To spend months studying and contemplating hope in a way that I didn’t anticipate. Hope’s not optimism. Its not about expectation. I have realistic expectation for my child. Its definitely not the thing with feathers.

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation. Through all of this, that made the most sense to me. Hope just is. Its part of our human condition. It captures the vulnerability of hope as well. Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future. *It’s the story a man told about his grandfather’s wife dying. After 65 years, she was his lifelong partner and even his driver and he wasn’t sure what state he was going to find him in. So he walks in and says, “Hi Grandpa—how are you? How are you doing?” And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”. The grandson says “that’s great grandpa”. And the grandfather says “so I went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list? You see, my wife just relocated and her new address is heaven’”. The grandson sits back and laughs and says “Grandpa, you always help me see the glass as half full”. The grandfather sits back, looks at the grandson and says “no….its a beautiful glass”.

So, my moral obligation today was not to make you think that those of us who have children who are not following the path of expectation are hopeless. And it was also not to come up here and make you believe we are full of hope. Because it lies somewhere in the middle. If you are a person who sometimes struggles with hope…please know you are not alone. Thank you.

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

One night as I was plugging in my son’s iPad, I noticed he got a text. Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me. My child at 11 years old is completely illiterate and he had never gotten a text before. I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.

Hi A2. This is Ryder

Are you in bed?????

If you aren’t what time do you go to bed???

Maybe I have been wrong! Maybe school has been helping him truly cultivate and explore friendships after all! Real ones! A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls. Could he be a child from the resource room? I could not know that either because the school will not tell me the names of any of the children in that room due to “privacy”. The kids he spends the majority of the day with. The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.

My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago. A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it? Does this child comprehend that A2 can’t read? Could this be an adult? A teacher? A predator? My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!

As it turns out…..Ryder was trying to get in touch with A2. Just not MY A2. Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends. A2 was contacted by a ghost. An illusion of a promise of the world to come.

The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach. One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment. While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute. It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad. It would mean he was growing up.

Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes. One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall. “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”. I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.

These things. These little things that give us a perceived sense of value–that we anchor to other things and make them into something more. Ultimately, the text itself was probably meaningless to A2. He however does very much care about all those things that receiving a text implies. Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays. My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all. I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages. No girlfriend break up text. No secret texts between friends who are standing right there with him, exploiting his trust. No anxiety over the three dots or “read” receipt. No. None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.

About a week or so before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself. For many years I thought it possible I could one day be a leader. However, my cherubic cheeks, diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time. I was a cartoon character. An adult who looked and seemed like a child in every way. Even while playing grown up in my power suits and single karat ring, the truth was I worked in management in state funded nursing facilities selling hopes of a dignified death to desperate families. And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.

On this particular September morning I whipped into the parking lot of the Skatetown roller rink just like I did every morning at about 8:45am. It gave me just enough time to put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am. As I dabbed the black goo onto my lower lashes, Bob and Tom or Frank and Steve or whoever the goofy morning team people were on that local station, broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it. I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing. It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions. There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.

At just after 9:00am, as I was thinking about cutting the engine and knocking on one of the 1st floor doors of the nursing home to get in, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine. “Another plane just hit the 2nd tower. I don’t understand what’s happening.” And neither did I. And neither did the rest of America. I sat in my car and for the next 20 minutes listened intently to verbal chaos. Once I realized no one knew anything, I dashed inside to the tail end of a the daily meeting I typically took over and attempted to lead out of frustration for lack of accountability.

“Did you guys hear about the Twin Towers?” I asked breathlessly setting my purse on the table in front of me. Of course, they hadn’t. They were mostly grown ups and had been at work since 8:30am, like I should have been. “Some sort of accident. It’s probably satellite or something messing with air traffic control.” I of course had no idea, but I was credible enough that people were concerned. I was in-the-know and NOW we have a meeting.

I walked back through the day room where there were two TVs on different stations but both were playing the same footage over and over. There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with people-regular people, that tore into the middle of the North Tower and immediately turned to smoke. People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.

“Becky….Becky…can you turn this crap off and put on my shows?” Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning. My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand. Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm. She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country. I wondered if this is what dementia must be like. I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea. Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist. Camera crews live filmed authoritative sounding officers standing in the lobby and strategizing their plan. Community servants looking for leadership while nodding heads, axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon. But then came the first BANG-loud enough that it was audible on the crappy 20 inch TV. The workers stopped talking and looked around. And then there it was again BANG. And again. I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably. It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows. They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness. And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right. Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.

And then life went on. I had a meeting the very next day with a former employer who wanted to me to come back to them and were willing to let me set my own schedule and pay my tuition for graduate school which started the following week. I spoke nothing of 9/11 again. An old colleague was sitting at her desk and I waved to her smiling and telling her of my soon to be new-old life and how I looked forward to seeing her regularly soon. She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River. But see…that was the thing. I thought no one knew how to act because I didn’t. It still was far enough away that we could all go on like normalish. I was politically aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so virtuous and valuable as a price above rubies as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing. I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war. And that is what I told myself. And then life went on. And eventually it did for everyone else too. Life wondering exactly how a loved one died or if maybe they would show up some day. Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds. Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another. Life of knowing just how horrible people can be to one another. And life went on.

Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus. He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young. It was no small decision and perhaps ultimately made under the haze of xanax. I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other. Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling. Not at all what his ABA classroom looked like…way too much to distract..but it was all good. He will learn to adapt to this no problem…the neighborhood kids are all here! Someone took the time to take all the crayons out of the boxes! I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else. There was an envelope on his desk with all the “getting to know your child” papers like everyone else. There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else. Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff. Then the teacher started talking. And talking. And asking us to turn pages in our packets. And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last. And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2. Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot. But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out. That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse. A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”. She meant well, but he could be a rock star at his other school. I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?” or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either. I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo. I’m ok with all that. What is hard is that the rest of the world generally is not. While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask other kids if they will skype or text him later. Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway. He doesn’t get detention for talking out of turn or showing up to class late. He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book. And curriculum night? Well…all those things are written in the blank spaces between the lines on the syllabus. The syllabus that is only visible to certain parents. Not just like everyone else. The tiny desk is like a mirage. Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him. Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do. And not just at 80% accuracy in 4 out of 5 observed opportunities. I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely. And I won’t sit through that. So tonite, the very last curriculum night of elementary school for me ever….like a pro I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night. What would you rather do?

Here is a short list I had some friends help me compile. Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie